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Words & Mindsets Matter: A Heartfelt Request For April (And Beyond)

“Mom, it really hurts when people say such negative things about autism. Do they even care about how Autistic people feel?!”

I’m not a blogger, but these words (and encouragement) from my impressionable young daughter were enough to compel me to register with WordPress for one post  — just in time for April, the month in which autism tends to be the talk of the town.

Between the World Autism Awareness Day on April 2nd and the recognition of “Autism Awareness Month,” April brings an inevitable flood of blue lights, puzzle pieces, theories about possible causes of autism, and stories from parents.

April can provide some good opportunities for people to learn more about autism, but unfortunately, it can also be a time for harmful stereotypes, misinformation, pity, and fear to gain traction.

As a neurotypical parent raising an Autistic child, I am so grateful to the many Autistic young people and adults who are willing to share their insights and experiences with me through blogs, books, videos, and online and in-person friendships.

Many of my Autistic mentors and friends have indicated that they find the month of April stressful and frustrating because the tone of various awareness campaigns often depicts autism and Autistic people in a negative light — and all too often, the perspectives of people who are actually Autistic get lost in the clamor of various events.

Thus, as we head into this traditionally “autism intensive” month, my daughter and I have a two-fold, heartfelt request:

First, whether you are a parent of a newly diagnosed child, a teacher, a therapist, or simply someone who is interested in learning more about autism, please don’t overlook the perspectives and experiences of Autistic people. Instead, actively seek them out. Encourage the people in your networks to do the same. There are no greater experts on autism than those who have the lived experience of being Autistic. How I wish I had known this when my daughter was first diagnosed.

Second, before passing along a link or internalizing something you’ve heard or read about autism, please reflect upon the types of signals that are being conveyed. Please consider if the messages are respectful to Autistic people or whether they will likely contribute to unfair stereotyping or promote fear. Thanks to those of you who already exercise such care.

The more I learn from Autistic kids, teens and adults, the more aware I become of just how damaging (and common) it is for people to:

  • Perpetuate the myth that autism is some sort of “modern day epidemic”
  • Suggest that Autistic people can be “cured,” “recovered” or that the end goal of any therapy should be making an Autistic person look “indistinguishable from peers”
  • Claim that “X” (e.g. modern diets, hand sanitizer, Peppa Pig etc.) causes autism, and therefore, “X” should be avoided at all costs
  • Insist that — despite overwhelming evidence to the contrary — vaccines cause autism or that fear of autism is justifiable reason for not vaccinating (I’m looking right at you, Donald Trump)
  • Share negative, vulnerable or humiliating moments in an Autistic person’s life without their consent
  • Use dehumanizing terms to describe Autistic people, such as “sufferer,” “burden,”  “low functioning” or the r-word, but…
  • Correct people when they use identity-first language, as if the word “Autistic/autistic” is something shameful
  • Assume that an Autistic person with high support requirements can’t understand what’s going on or can’t find happiness, yet…
  • Assume that an Autistic person who does well at school or has a job can’t possibly also have real needs that require support
  • Refer to autistic people with sweeping generalizations or with feelings of pity or objectification (what the late, great Stella Young called “Inspiration Porn“)
  • Continue to dismiss Autistic voices, especially when it comes to discussions about autism

I could go on and on, but hopefully, the point is clear. How we communicate and think about autism can have an enormous impact on how those around us view autism and even on how Autistic people like my daughter view themselves. Autism can certainly come with significant challenges, but many of them are due to the fact that our world is not set up well to accommodate and embrace those who are different.

This is why Autism Acceptance is so critical.

At its core, acceptance means listening to Autistic voices, valuing and respecting people for who they are and working to make the world a more welcoming place. Acceptance does not mean ignoring the very real difficulties that Autistic people or their families might face, but it does mean finding ways to recognize and support these needs without promoting fear and stigmatization.

The concept of Autism Acceptance has been a part of the Autistic self-advocacy community for a long time. In 2011, April was officially re-cast as “Autism Acceptance Month” to counter some of the ineffective and/or damaging messages coming from various awareness efforts.

Over the past several years, Autism Acceptance Month has grown to include not just Autistic people but also neurotypical parents, educators, care providers, advocacy organizations, and other allies who are committed to sharing “positive, respectful, and accurate information about autism and Autistic people,” and that work isn’t just limited to April! At the end of this note, you can find the links to some wonderful pro-acceptance groups and individuals. I hope you will check them out.

One final note before I sign off. I call myself an “aspiring ally” because I am still learning and have made some stumbles along the way. But one thing I know for sure is that the real expert on autism in our family is not the mom with the keyboard —  it’s the creative, sensitive pre-teen who loves anime, coding and cats. She deserves to feel accepted for who she is, as she is — just as every Autistic person does.

Let’s make Autism Acceptance the theme for April and every other month of the year. Here are just a few ways  to get started:

* Listen to, connect with, and learn from Autistic people. There is such a vast array of perspectives and experiences. If you’re looking for somewhere to start, the materials on the Autism Acceptance Month site are fantastic and suggest specific actions we can all take to be allies.  I also recommend Jeanette Purkis’ Autism Books & Things, Ollibean and The Thinking Person’s Guide To Autism (among many others!)

* Keep an open mind and be willing to have your assumptions challenged! When we know better, we do better.

* Move past the traditional deficit-based definitions of autism. “What Is Autism?” is answered beautifully through this video explanation by Amethyst Schaber and through this powerful written definition by Nick Walker.

* Focus on what Autistic people can do. For a strengths-based look, check out The I CAN Network and their awesome April series, “Humans On The Autism Spectrum.” 

* Recognize parent bloggers who write respectfully about their Autistic kids and other Autistic people. Two of my very favorites are  Diary of a Mom and Squidalicous.

* Buy, borrow or download Steve Silberman’s award-winning, critically acclaimed masterpiece, “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.” If you don’t have time to read it now, take 14 minutes to watch his brilliant TED presentation, “The Forgotten History of Autism.”

* Respect self-advocacy in all its forms. If you want to understand why messages and mindsets matter, check out this beautiful effort by young Autistic siblings, Alyssa and Lachlan via “Alyssa’s Autism Acceptance Project.”